Torie's Story

Thursday, September 17, 2009

September 17, 2009 - Late
Torie did great today. She's now in room at Univ of Minnesota Children's. She got her 1st dose of Intrathecal enzyme at 12:58. We're on our way. We feel so fortunate to be here. Minnesotans are super, doan cha know? Ronald McDonald house is an amazing place. I'll post more tomorrow..I've got a week to catch up on in one day! I'll do my best. All my thanks to CAE for her blogging guidance and support!

3 comments:

JECKBECK (Erin)September 17, 2009 at 11:38 PM
Oh Happy Day! Can't wait to see and hear more...
ReplyDelete
Replies
RobynneSeptember 18, 2009 at 6:48 AM
Little Torie is in our thoughts and prayers - we will keep up with you guys through this blog, great idea! We're glad things are going well!

Love, Robynne (Flake) van der Werf
ReplyDelete
Replies
The WylersSeptember 18, 2009 at 2:29 PM
I am a friend of Erin's and while I don't personally know this sweet little girl . . . you can bet I'll be praying for her.
ReplyDelete
Replies

Add comment

If you are leaving an "Anonymous" comment, please leave your name so we know who to send happy thoughts back to!

What is MPS I?

Mucopolysaccharidosis I (MPS I), pronounced mew-ko-pol-ee-sak-ah-ri-doh-sis one, is a rare genetic disorder that affects many body systems and that leads to organ damage. It is caused by a defect in the gene that makes an enzyme called alpha-L-iduronidase (pronounced al-fa el eye-dur-on-i-dase). Because of this defect, cells either produce the enzyme in low amounts or cannot produce it at all. The enzyme is needed to break down substances called “glycosaminoglycans” (GAGs), pronounced gly-cose-a-mee-no-gly-cans, which are by-products of chemical reactions in the body’s cells. If GAGs are not broken down, they build up in the cell, eventually leading to cell, tissue, and organ damage.

Torie's Story

Thursday, September 17, 2009

3 comments:

Blog Archive

Total Pageviews